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Tuesday, March 10, 2009

Weaning Off Prednisone, Hydrocortisone Corticosteroids

Summary of PostThis article outlines my regimen and steps I took to wean off steroids after nearly 9 years on steroids. A 'no carb' Atkin's type diet and strict management of all forms of stress (physical, emotional, pollutants, etc) were central to my successful tapering off steroids (following the Pulse and Stretch Protocol) and full recovery. Today, I remain in full remission from Henoch Schonlein Purpura.

An Important DisclaimerI am not a medical doctor.
My CredentialsMy PhD is in Entomology, all my operations have been on insects, and I have a 0% survival rate (all my subjects expired). No wait. That’s not very reassuring. Ok, take two. I am intelligent, and a very persistent researcher. I am good about pulling together information from many sources and putting it down in plain English. I know what is like to be sick and desperate for a cure. (Read about my disease here).Best of all, I am an ex-patient! In fact I am training for my first triathlon this year!I testify that YES it is possible to reactivate ‘dormant’ adrenal glands and wean off long term steroid dependency.
Use it or Lose it: Your Adrenal GlandsIf you have been on steroids for many years, the adrenal glands – your body’s own producer of steroids – will likely not be working well. Your adrenals’ duty is to produce cortisol to counter stress in your life, so eating synthetic versions of this hormone (such as prednisone, hydrocortisone, dexamethosone and etc) signals your adrenals to “Stop making cortisol!” because there’s plenty floating around in your blood. Over years taking steroids daily, the adrenals atrophy from not being called on to produce cortisol (‘use it or lose it’). This is why your doctor warns you not to stop taking steroids abruptly. He is absolutely right. If you stop suddenly, your weakened adrenals won’t be able to produce the cortisol needed to keep you alive and you will have an adrenal crisis. Don’t even think about it.
The Key to Reviving Adrenal Glands

The answer is simple. NO STRESS. In this, I don’t mean ‘don’t get stressed out’, or ‘hey no worries matey’. Think about every sort of stress your body could be exposed to in addition to ‘stressing out’. Death of a loved one, a divorce or breakup probably come to mind as stressful, but not getting enough sleep, eating junk foods, smoking, drinking and polluted work/living conditions are also stressful. (Read more on how stress does a number on your adrenals in my upcoming posts). To support adrenal functioning is important for every person, and even more if you are trying to wean off steroid dependency. You will need to reduce the ‘overhead’ stress in your life, big time.
My Personal Regimen All of what I did is based on my understanding of how the HPA-axis (Hypothalamic-Pituitary-Adrenal axis) works and natural cortisol production. I’ll go in depth in a future post but right now I’m going to lay out my life for you to pick apart!

Sleep. Getting enough sleep and at the right times was very important. I would be in bed by 10 pm, and asleep by 11 pm. I would stay in bed as long as I needed to, at least until 8 am. Total hours of sleep: 10 hours a night.

Diet. I ate no sugar and no carbohydrates. ‘What? No pasta, rice, bread, candy, cakes, pastries…?’ Yep. Nope. Yep. Cortisol is used in metabolizing sugars, and eating sugar and carbs (which end up as sugars) stresses out the adrenals by making them work harder to produce cortisol. Instead, I ate organic protein foods, good fats and veggies. Breakfast would be four Omega-3 DHA eggs scrambled in 2 T of extra virgin organic olive oil. Lunch would be free range organic chicken with a salad (Recipe HERE), and same with dinner. Raw unrefined sea salt made everything taste delicious. I have a gazillion recipes that I will save for future posts!

Living environment. Fortunately I lived right next to a forest and had fresh unpolluted air. This was extremely important. My body didn’t have to deal with the added stress of detoxifying pollutants, while on this regimen to kick-start the adrenals. I also used organic and natural body care and household cleaning products. The regular products contain petrochemicals (artificial fragrances), preservatives and other additives that add to the toxic ‘overhead’ the body is exposed to. Don’t need any of that.

Exercise. Uh oh. Did I say exercise? Don’t worry, it’s not anything hardcore. Actually it would be a bad idea to physically stress yourself too much anyway – stress is a Bad Word at this point. Now wasn’t that just what you wanted to hear? Vigorous daily walks that get the blood flowing did me lots of good during the tapering. Toxins get flushed out by sweating and deep breathing!

That’s it! My personal regimen was pretty straightforward. I did all that while I tapered off the steroids (gradually reduced my dosage). I started the regimen in Nov 2007 and was completely steroid free in 6 months. In the years after, whenever I relapsed due to extra-stressful times, I have used this protocol (and variations of it) to wean off the steroids.

Ever heard of the Pulse and Stretch Protocol? It’s a detailed step-by-step guide on how to wean off the steroids and provides information on how fast to wean, how much to reduce the dose by, and what to expect while tapering. I have slaved over countless drafts of it while all of you waited so patiently and I am so glad to announce that it is finally here! (Read more about the Protocol HERE).

(Update: Folks who are serious about weaning off steroids, the best and most helpful book I've read is Dr James Wilson's Adrenal Fatigue: The 21st Century Stress Syndrome (my Review HERE). It would have spared me years of guinea-pigging myself if I woulda just read it first, no kidding! One of the best $10 I ever spent.)

37 comments:

Thanks for you article. I have Lupus SLE and have been having trouble with my platelets. I have been on prednisone consistently for a month and a half now and want to come off before I end up dependant on it. I have started the weaning process but was concerned and that is how I came across your article. I have somewhat of a challenge because I am about 100lbs overweight and LOVE CARBS! But I know that I must do something to help my medical condition and I will take your advice. Thanks Again

Your Health Matters blog is just what I was looking for, also. A lifetime of allergy induced asthma has made me too familiar with prednisone. I had actually weaned myself off after the last multi-year use, but inhaled steroids have been needed as well as a xolair shots. I recently learned that even those can be cancelled out by stress and an overdose of cat allergens - and I'm back on a relatively low tapering dose of prednisone. I want my adrenals back in shape!

It is wonderful that you share your information. I used to try to taper while maintaining high stress levels - overcompensating or denial, I guess. Your No Stress advice will be incorporated in my new regimen. Your blog is so supportive and I look forward to reading about the Pulse and Stretch Protocol.

Hi Sandy, Thanks so much for your positive feedback on my articles and for your contribution! I can't begin to describe how much this has encouraged me. I spend lots of time responding to emails from readers asking about my experience and asking for more advice, but this is the first time anyone has donated to support my freelance writing hopes. Times are tough and I've tried selling stuff on Ebay, hawking my bug expertise and etc as a 'better' (financially) use of my time than writing. But your feedback has reminded me how much I love helping you good folks out there and I should continue to share my experiences through this blog. Thanks again, Grace.

Natalie,Thank you for your feedback! I totally empathize with your love of carbs - I'm a former carb addict too! But you and I know that the instant gratification of chowing down on that slice of chocolate cream pie is not worth the pain and suffering coming from a worsening medical condition... right? Take care and good luck! Best, Grace.

Thanks for your helpful email a few weeks back. I switched to Cortef, 20mg, which seems to be working better than the generic stuff. And I've weaned down quite a bit on my thyroid medicine, which means I require less cortisol.

Unfortunately, I switched to a paleolithic diet, which includes fruit, and my yeast problem is running rampant. It's' growing on my face, and it's a giant mess. I'm asking my doc for diflucan, because I've been fighting this for two months with no results except a red, burning face and a lot of embarrassment.

Hey CM, thanks for sharing - everyone chips in with comments that could very well help another reader and that's great. You're right about the Paleo diet and yeast problem. Any diet that allows consumption of carbs in any form (even natural fruit sugars) could bring on or aggravate an existing yeast syndrome. When I was weaning off the steroids, my total carb consumption was less than 10 grams per day. That's about 1 cup of milk. I ate very little fruit, if at all, but did have green leafy salads. Take care and keep truckin! Grace

I had a stomachache July 30, 2009 and ended up having two feet of my small intestine removed August 17, 2009. On August 21, 2009 I developed a rash on my legs and arms. This was diagnosed as HSP. I started intravenous steroids August 21st until I left the hospital August 28th. I have been on oral Prednisone since August 28th. I have had difficulty finding a doctor (Rheumatologist, Dermatologist, Gastronenterologist, Primary, etc.) who will take me off the Prednisone because of the fact that the HSP affected my small intestine (although most agree I don't need it...they don't want to make the call). Finally, I requested my Rheumatologist to ween me off the Prednisone even though she didn't agree. I now have a schedule of:30mg = 3 days20mg = 3 days10mg = 3 days5mg = 3 days2.5 mg = 3 days

Let me know how this compares to your weening off. As of today, I have been on steroids for a total of 5 weeks.

Hi Escapepod,Thanks for your question. It should probably be okay to taper quickly as your rheumatologist is instructing, because you have only been on the steroids for a month. It's possible that your HSP symptoms may return during or after weaning off the steroids, unless the underlying cause/trigger of the HSP is resolved. Something is triggering your HSP and you need to figure out what it is, and remove that factor asap. Good luck, Grace

Thank you for your article. It gives me hope . Doctors tell me to get off the prednisone but no one gives a hint as to how and the last doctor that did nearly killed me with his recklessness. Shouldn't have listened but he's history now. I've been on prednisone since 1994 starting with only 2mg. I gradually increased to 5 as it took away most of the symptoms, I could function better and didn't feel as if I were dying all the time.

I have already started the diet you mention except I have been eating more fruit than you suggest. I love an occasional cake or cookie so this is going to be rough rough rough. But I want to get off the steroids. My endo said my cortisol is all gone as my body is not making any. I am on 23 mgs. per day.

Hi Deb, thanks for sharing. Hope the new diet is helping with your efforts to wean off the steroids. Did your endo conduct the Synacthen activation test to see if your adrenals were still producing natural cortisol? Or did he assume that since you've been on the steroids for so long that your adrenals are no longer working? Having been on the steroids since 1994 and your current dose of 23 mgs (it is pred right?) is quite high, but I wouldn't give up hope of weaning off yet. Write me more if you'd like, in the mean time keep truckin!

So, I stumbled on your page, after searching for information about tapering off my dog's prednisone meds, prior to a second blood panel. My dog, has been diagnosed with addison's disease, and I am going to get a second opinion. Basically, it appears in the Vetinarian world, that any adrenal failure, is considered to be a chronic issue, and is treated by the immediate initiation of a life long hormone replacement. Before I get too far along this path, I want to get a second opinion, and hence need to taper my dogs meds, before the nect blood panel. Thank you so much for your insights on diet, and relieving stress factors--although your article is geared towards humans, I found the insights useful.

I wad diagnosed 1 1/2 years ago with nephrotic syndrome after a reaction to an antibiotic. I am on 8mg Medrol and an immunosuppressant... Over the past year and a half the symptoms have subsided but returned each time I have tried to wean the cortisone under the doctors instructions. I am stable at the moment and the drs have said I must stay on cortisone for 6 months symptom free and then we can begin again to wean..... I was on 16mg Cortisone and was told to slowly bring it down to 6mg and stay at that dosage. I also want my adrenals back in shape.Have you had any experience with nephrotic syndrome

Hi Caroline, yes I have/had nephrotic syndrome. Too much stress of any kind (physical, environmental, emotional) can trigger an immune response that then brings on nephrotic syndrome (for me). In my case, I have a hypersensitivity to 'mucosal irritants' such as cigarette smoke and chemicals, and my immune system responds by producing huge amounts IgA antibodies, which eventually end up in my kidneys and 'clog' them up and make them 'leak' protein. Hence the nephrotic syndrome. The steroids suppress your body's immune response to whatever is triggering that response. In my experience, I wasn't able to wean off the steroids without removing the trigger/s that got me sick in the first place. Hope this helps and don't hesitate to ask if you have any other questions.

Thanks for the very informative article. If you've been on steroids for any amount of time, you know how difficult it can be to wean off of them.Your diet, exercise, sleep, and no stress regime makes sense to me. But I could not find the Pulse and Stretch protocol you referred to in your post to wake up dormant adrenals. Could you point me in the right direction for this?

Gracie sure seems to have done her "homework" and save the rest of us a lot of hard work. Now what remains is to follow her trail through the woods (with some medical supervision of course) to freedom from steroids!

Thank you for your article. I have been on Hydrocortisone now for 7 months. I was hospitalized and diagnosed with Adrenal insufficiency, possible Addisons, in Sept.2010. I started at 17.5 mg and am now down to 12.5. I would love to read about your Pulse and stretch protocol. Any help with this weening process would be greatly appreciated. So far, the only reasons for my condition are stress, emotional and physical. I am determined to get off this medication.

Hi Dough336, thanks for sharing - I'd be happy to email you my working draft of the Pulse and Stretch Protocol, which has been an integral part of my successful weaning off steroids. Let me know! Take care.

This was really helpful, thank you.I was on 20mg Prednisolone for 2 years and am now down to 15mg but have had great difficulty in dropping further. Seems like I will have to give up the carbs (which I love) and get to bed earlier. I'll check out the book you recommend too.

Thanks, Gracie, for this article. After taking Prednisone since 2003 for severe asthma, I've managed to reduce the daily dosage from 20 mg to 5mg per day. I have found that pretty tough but want to go further. I would be really interested to read your Pulse and Stretch Protocol. Cheers.

My daughter, 5 years old, has been on oral Pred for 15 months. Her SJIA is now under control because of Actemra so we are tapering Pred. Her dose has been between 5 and 10 Mg for the duration. We have taken her from 10 to 4.5 over the last 2 months in .5 Mg decrements. The recent drop to 4.5 was accompanied by sweating, vomiting, and a low body temp. I think we are seeing adrenal insufficieny. I agree with what you say about the stress part of all of this. I did not know about the sugar part, and I will look into further. Thank you.

Hi Anonymous, sorry to hear about your daughter's suffering over the past year. Somehow it is always more painful when a child is stricken by illness and I truly feel for you. I'm glad you are with me on the 'stress part' impeding her weaning and highly recommend Dr Wilson's Adrenal Fatigue book ($10 only) that will authoritatively outline what needs done to get your girl's adrenals working right again. He talks extensively about diet and how simple carbs like sugar place stress on the body. Take care.

Hi all!Just wondering if body and joint aches and overall malaise with tiredness is part of the discomfort with decreasing steriods. I'm on prednisone for asthma/allergies/chronic cough. I'm down to 1.5mg from 100mg. Have been on steroids for 6yrs.

Hi Anon! Good question. Yes in my experience, overall malaise is felt the first few days after dropping the dose, but this discomfort should not be unbearable. If it is, you might be dropping too much/quickly. This discomfort should ease as the body gets used to the new lower dose, but if it doesn't go away or even gets worse, then I would go back to the previous dose. Hope this helps!

My partner, a feisty 80 year old debilitated by massive heart surgery and a stroke in 2008 was prescribed cortisone after a bout of osteo arthritis had him hospitalized early in the year. Initially prescribed 25 mg of cortisone, he was weaned off to 5 gm and told to stay on it a 'maintenance' dose to prevent further episodes. Since this low dose regime (only a couple of months) his face has become puffy and his trunk has ballooned, making breathing difficult. This is despite an attempt to reduce his calorific intake. The doc suggested the cortisone was causing the weight gain and suggested he slowly wean himself off the steroids. It's only been four days, but so far, so good.

It's reassuring to hear your story. I'm interested in your remarks about carbohydrate consumption, but at 80 it's hard to shift old habits.

Hi Allison, thanks for sharing and glad to hear that your partner is slowly weaning off the cortisone. I believe weight gain was not a problem for me because of my low carb diet. On higher doses of steroids, I get a huge appetite, and I eat a lot more. But I stick to the low carb diet. Unlimited steak, chicken salads, etc. It's true that it would be difficult to change habits at 80, but if possible, some immediate changes would be to eliminate or drastically cut down sugar and simple carbs consumption. I don't feel like I'm being deprived because I can eat as much as I want - as long as it's not carbs. Hope this helps!

Hi, My name is Heather and I have been on Prednisone for 4 years. I have an autoimmune disorder called Idiopathic Hypereosinophilic Syndrome. I have been trying to get off the Prednisone for a while now and it's not working. I am worried because my cortisol is only 27, hence me being light headed and nauseous :( I need help because my diet and lifestyle are causing me stress.

Hi, My name is Heather and I have been on Prednisone for 4 years. I have an autoimmune disorder called Idiopathic Hypereosinophilic Syndrome. I have been trying to get off the Prednisone for a while now and it's not working. I am worried because my cortisol is only 27, hence me being light headed and nauseous :( I need help because my diet and lifestyle are causing me stress.

Hi Heather, sorry to hear about your illness and struggle to wean off Prednisone. What is your diet and lifestyle like and in what ways are they causing your stress? In my experience, these are the most important issues that need to be addressed before you can wean off the steroids.

Hi Sandy, Thank you for this post. I have fibromyalgia and was put on 25mg of prniselone then reduced slowly to 2mg after suffering from thyroiditis. The problem is taht I started to reduce, my tendons became inflamed to the point that i needed to have blood injections into my hip. That is settled now but all my tendons remain much more painful since. I have tried reducing by a quarter but even this tiny amount ends up causing me such pain that I always have to get back on to 2mg. I want to get off but can't. I follow pretty much what you do but i do have a limited amount of carbs. I'm also on a yest free and gluten free, sugar free diet for my fibro.

I have been on medrol for 3 years for systemic lupus, one day I'm a vibrant nurse working 40 hours a week and the next day i had a stroke and i'm suddenly so ill and it's only gotten worse for me. Now I've been dx with POTS, diabetes insipidus and most recently severe cervical spinal stenosis. I never gained weight on the steroids, in fact I lost weight, now only 115 pounds but I know that has to be related to the POTS and having a heart rate of 130 most of the time. I'm DESPERATE for some relief from living with chronic disease processes. Most recently a neurosurgeon has told me he wants me off the steroids completely because they're masking most of my Neuro symptoms related to the cervical stenosis and he wants to " see the real neurological effects" from the stenosis. Here's the big problem.... I can't seem to get past 5 mg before I can't walk straight and fall down because I'm so completely off balance. My rheumatologist has had me try several times in the past and its been disastrous! I have so many doctors with so many opinions on how and whabi should do that I just want to scream, I am on disability a I can barely function , I am a vegetarian(10yrs) so I dont eat meat and rarely dairy because it makes me feel sick to my stomach. I do eat salads and get my protein from beans, legumes etc. it what I'd like to know is how will I know if my adrenal glands are "waking up"? I am down to the 5 mg again and am very very emotional and I know it's because I feel so crappy but my muscles have this deep aching and I feel so weak.... Any suggestions? I am so much better at caring for others but when it comes to myself I feel clueless and too many damn doctors all have their own ideas and I could really use advice from someone experiencing the same issues! Thank you for listening!Jackie

Hi Jackie, so sorry to hear about what you've been suffering. You being on methylprednisone for the past 3 years at a low 5 mg dose would probably weaken your adrenals but not too badly. Your repeated bouts with illness would also further tax and weaken your adrenals. You can take a salivary cortisol test or synacthen test to see how well your adrenals are working. How would you know if your adrenals are 'waking up'? Well, usually when (gradually) tapering the steroids, the body will experience 'discomfort' as the adrenals try to produce what isn't taken orally. If your adrenals succeed in doing that, you will usually feel better - you could say they are 'waking up'. Are you able to modify your vegetarian diet to a low-carb one (no sugar, bread, or pasta. largely salads and legumes, maybe eggs if you take them)? Take care and keep in touch.